[SpaceCadet]

I'm pretty sure everyone here is probably tired of hearing me complain about my situation. *I'm* tired of my situation...My cognitive functions have gotten worse and worse as the months pass. Every day I wake up and I'm either the same as the day before or worse. Its not a roller coaster...if it was, I'd have symptom free days or good days followed by some bad days. Its not like that for me. Every day is bad...really bad, and its just a matter of whether its tolerable or not. Usually not.

I'm changing...my personality is changing, my speech is changing, my thoughts are changing. When I go to open my mouth, nothing comes out or its jumbled all around. I can't form thoughts to put into speech anymore. I'm even having trouble interacting with my son. That started at the beginning of this month and just got worse a few days ago and just stayed that way. Out of nowhere, I will become completely unaware of my surroundings. My brain shuts down in short conversations...I wake up not knowing where I'm at, thinking I'm at my old apartment or sleeping in my car. I wake up sometimes and the person I sleep next to doesn't look familiar. I go to say something and blurt something out that doesn't make sense. I know what I want to say but my thought process just stops when I start speaking.

Yeah, I have some stressful moments. I get angry and have anger outbursts...okay, we all know stress makes things worse. But, it usually takes a day or a week to recover from a stressful day or event. I don't ever recover from them. I have a stressful day...wake up the next day non-functional. So, I tell myself okay, I'm having a setback. I remain calm...get plenty of rest, have very minimal conversation and limited computer time...I sleep that night a full 8-10 hours and wake up the next day even worse....and it just stays that way and repeats everyday. It doesn't get better at all.

I'm not tired. My brain isn't exhausted. Its just screwed up all the time. I feel wide awake. I sleep well, I have full, vivid dreams that I usually remember when I wake up. I don't even do anything really...maybe some browsing on here, some laundry, make a sandwich. I don't watch TV or play video games. I go for walks around the apartment complex. I don't even go shopping anymore. So what the hell???

How the hell are you supposed to stay positive when your life sucks every day? What's the point in living if you have nothing to look forward to but a load of crap everyday? Man, I can't even interact with my son because my cognitive symptoms have me acting weird and saying weird stuff and feeling weird, and not recognizing my surroundings and the people around me.

Don't get me started on health care. I have no help from any doctor that I've ever seen. None of them give a crap about me...I tell them what's going on, and how I don't have any improvements, just a constant decline for 9 months and they don't say or suggest ANYTHING. You know, I just had to refer MYSELF to a neuropsychologist for an exam? I had to refer MYSELF to a speech therapist...none of the doctors even suggested those things. They don't try to do anything to find out why I'm getting worse. I haven't hit my head again, at least not hard enough to cause a concussion. Its not freakin stress..because stress doesn't cause permanent cognitive and neurological deficits, okay? Its not all in my head...I know that for a FACT.

I have Victims of Crime which pays for CRIME related expenses. So, if there is something else going on with me, like MS or some other kind of neurological disease or something else that needs to be checked in a full blood panel...I can't get it. I don't have insurance. I spent a couple hours trying to find an affordable insurance plan that doesn't have a huge deductibe...I couldn't find anything.

What am I supposed to do? I'm not freakin kidding when I say that I'm getting worse and staying worse...who do I turn to? I've seen 3 neurologists, a psychologist, a psychiatrist, a nurse practitioner...I'm going to see a neuropsych for an evaluation, but what good is that gonna do? That's just going to prove I'm screwed up...but what can they do about it?

IICP? Dementia? Alzheimers?

It has to be something. Do you know anyone with a brain injury that slowly got worse instead of better? What about someone with a brain injury that gets no headaches at all? Just worsening cognitive deficits that get worse every couple months??? I've read just about every thread on this support group and the other one I'm a part of and have found nothing like it.

I'm sorry for the rant, I'm sorry for whoever is reading this but I need HELP. I just want to get better...I want to find out what is stopping my recovery and making me go backwards. What do I do???? I want to enjoy my life, I want to be able to take care of my son. I'm at a freakin breaking point...

[July63]

Man, you are a younger me, except if your CT shows damage then a neurologist should be helping you more than they are. I watch people on the street smile and I am like, ****, how do I get that way. I am so unhappy but for me drugs aren't going to fix happiness.

I cannot type all I go through, but some in the forums know. I was attacked by multiple people in West Berlin in 1984 while in the US Army and on duty, and attacked in NYC about 10 years ago after walking a girlfriend home, I wandered into East Harlem (First and around 100 street; she lived in the 80s).

I am 48, and still dream of having children, but the reality is that after all that was taken from me, hell, how can I get 30 year old woman if I am a 6 foot, 260 pound whining man-child. The attacks changed me.

You have to find a doctor that is on your side. Your confusion things suck. Some may be meds, some are just what it is. I thought the month was May last week, then I figured out it wasn't, and I was like, geez, how long didn't I know it.

To be positive, the only thing you can do create a goal, write it down, read it every day, and work towards it (Napoleon Hill stuff), you cannot change the situation, you can only change the movement forward. Personally, I suck, I cannot follow though on my own advice, however, I know it is right.

Seriously, what if you get the symptoms of dementia or, Alzheimer's, not like you can stop it; I take max aricept everyday, but if the time comes and you lose it, man, it is just the cards, to stay positive, make goals and reach.

Hey, I rambled and talked a lot of myself, I suck. Maybe I said something good in the ramble though,.. or maybe not. With a TBI, this is the stuff you do, ugh.

Originally Posted by nwsmith1984

I'm pretty sure everyone here is probably tired of hearing me complain about my situation. *I'm* tired of my situation...My cognitive functions have gotten worse and worse as the months pass. Every day I wake up and I'm either the same as the day before or worse. Its not a roller coaster...if it was, I'd have symptom free days or good days followed by some bad days. Its not like that for me. Every day is bad...really bad, and its just a matter of whether its tolerable or not. Usually not.

I'm changing...my personality is changing, my speech is changing, my thoughts are changing. When I go to open my mouth, nothing comes out or its jumbled all around. I can't form thoughts to put into speech anymore. I'm even having trouble interacting with my son. That started at the beginning of this month and just got worse a few days ago and just stayed that way. Out of nowhere, I will become completely unaware of my surroundings. My brain shuts down in short conversations...I wake up not knowing where I'm at, thinking I'm at my old apartment or sleeping in my car. I wake up sometimes and the person I sleep next to doesn't look familiar. I go to say something and blurt something out that doesn't make sense. I know what I want to say but my thought process just stops when I start speaking.

Yeah, I have some stressful moments. I get angry and have anger outbursts...okay, we all know stress makes things worse. But, it usually takes a day or a week to recover from a stressful day or event. I don't ever recover from them. I have a stressful day...wake up the next day non-functional. So, I tell myself okay, I'm having a setback. I remain calm...get plenty of rest, have very minimal conversation and limited computer time...I sleep that night a full 8-10 hours and wake up the next day even worse....and it just stays that way and repeats everyday. It doesn't get better at all.

I'm not tired. My brain isn't exhausted. Its just screwed up all the time. I feel wide awake. I sleep well, I have full, vivid dreams that I usually remember when I wake up. I don't even do anything really...maybe some browsing on here, some laundry, make a sandwich. I don't watch TV or play video games. I go for walks around the apartment complex. I don't even go shopping anymore. So what the hell???

How the hell are you supposed to stay positive when your life sucks every day? What's the point in living if you have nothing to look forward to but a load of crap everyday? Man, I can't even interact with my son because my cognitive symptoms have me acting weird and saying weird stuff and feeling weird, and not recognizing my surroundings and the people around me.

Don't get me started on health care. I have no help from any doctor that I've ever seen. None of them give a crap about me...I tell them what's going on, and how I don't have any improvements, just a constant decline for 9 months and they don't say or suggest ANYTHING. You know, I just had to refer MYSELF to a neuropsychologist for an exam? I had to refer MYSELF to a speech therapist...none of the doctors even suggested those things. They don't try to do anything to find out why I'm getting worse. I haven't hit my head again, at least not hard enough to cause a concussion. Its not freakin stress..because stress doesn't cause permanent cognitive and neurological deficits, okay? Its not all in my head...I know that for a FACT.

I have Victims of Crime which pays for CRIME related expenses. So, if there is something else going on with me, like MS or some other kind of neurological disease or something else that needs to be checked in a full blood panel...I can't get it. I don't have insurance. I spent a couple hours trying to find an affordable insurance plan that doesn't have a huge deductibe...I couldn't find anything.

What am I supposed to do? I'm not freakin kidding when I say that I'm getting worse and staying worse...who do I turn to? I've seen 3 neurologists, a psychologist, a psychiatrist, a nurse practitioner...I'm going to see a neuropsych for an evaluation, but what good is that gonna do? That's just going to prove I'm screwed up...but what can they do about it?

IICP? Dementia? Alzheimers?

It has to be something. Do you know anyone with a brain injury that slowly got worse instead of better? What about someone with a brain injury that gets no headaches at all? Just worsening cognitive deficits that get worse every couple months??? I've read just about every thread on this support group and the other one I'm a part of and have found nothing like it.

I'm sorry for the rant, I'm sorry for whoever is reading this but I need HELP. I just want to get better...I want to find out what is stopping my recovery and making me go backwards. What do I do???? I want to enjoy my life, I want to be able to take care of my son. I'm at a freakin breaking point...

[July63]

to add. My neuropsych testing over the years show the same: I have cognitive issues. It doesn't help my treatment, I see two cognitive psychologist a week. It will be good to know how you test, so you should do it.

Do the psychologists help: I don't know, probably, I haven't offed myself, but they didn't make me smarter.

Originally Posted by July63

Man, you are a younger me, except if your CT shows damage then a neurologist should be helping you more than they are. I watch people on the street smile and I am like, ****, how do I get that way. I am so unhappy but for me drugs aren't going to fix happiness.

I cannot type all I go through, but some in the forums know. I was attacked by multiple people in West Berlin in 1984 while in the US Army and on duty, and attacked in NYC about 10 years ago after walking a girlfriend home, I wandered into East Harlem (First and around 100 street; she lived in the 80s).

I am 48, and still dream of having children, but the reality is that after all that was taken from me, hell, how can I get 30 year old woman if I am a 6 foot, 260 pound whining man-child. The attacks changed me.

You have to find a doctor that is on your side. Your confusion things suck. Some may be meds, some are just what it is. I thought the month was May last week, then I figured out it wasn't, and I was like, geez, how long didn't I know it.

To be positive, the only thing you can do create a goal, write it down, read it every day, and work towards it (Napoleon Hill stuff), you cannot change the situation, you can only change the movement forward. Personally, I suck, I cannot follow though on my own advice, however, I know it is right.

Seriously, what if you get the symptoms of dementia or, Alzheimer's, not like you can stop it; I take max aricept everyday, but if the time comes and you lose it, man, it is just the cards, to stay positive, make goals and reach.

Hey, I rambled and talked a lot of myself, I suck. Maybe I said something good in the ramble though,.. or maybe not. With a TBI, this is the stuff you do, ugh.

[SpaceCadet]

Thanks, and I'm sorry to hear about what your going through.

Its amazing how your life can change in just one moment. My life came to a screeching halt that day.

I know "whining" about it on here doesn't fix anything...but, hopefully, someone that knows what I'm going through, such as yourself, will come along and share their experience with me.

I'm also looking for suggestions from people of why I could be getting worse every day. Maybe someone went through the same thing as me and found a solution...Maybe some doctor from Vegas will find this thread on Google and come save me.

I don't know, but it makes me feel better when I vent. So, I apologize to those that I've annoyed by my "whining". Imagine how I feel dealing with this. The way things are going I'll be a mute vegetable by the time I'm 30.

Cheers.

[July63]

okay, now we have to work on getting me a wife...






(that's a joke btw but I found it funny, stupid TBI)

[MommaBear]

I cannot think that anyone would be tired of your "rants". I would think we are all here to empathize and commiserate, and I do believe that we ALL have some kind of connection with each other, whether subconscious or cosmic or just plain "all - in -this - lifeboat - together" thing...

My heart goes out to you!! We're here for you, friend. Smile today and find a little peace in this knowledge, I hope it eases your mind a bit.

My 30 yo son has severe TBI / PCS. He is doing remarkably well after just 3 months, but he is not the same and I know a big part of my son died that day and will never return.

He is mostly adynamic with some disinhibition (strange how those two symptoms can be so concurrent!) but improving. I absolutely live for his spontaneous hugs and "I love you Mom"'s. Every moment is precious; I came within a hairs breath of losing everything he ever was.

Writing is great therapy, always has been for me. After all the vast amounts of research I've done in the last 3 months, I suspect I myself have some degree of accumulated tiny concussions over my lifetime that have added up. (Most recently a bit of stress induced TBI! It's been pure hell.) Shocking. I wonder how many people do also and don't realize it.

I believe our TBI mantra is (or should be, if not) is... NEVER GIVE UP!
So, bring it on, dude. Write your heart out. God bless.

[SpaceCadet]

Every one reading this probably thinks I'm crazy.

[Mark in Idaho]

Nick,

Where did you get this idea? <Its not freakin stress..because stress doesn't cause permanent cognitive and neurological deficits, okay? >

You don't necessarily have permanent cognitive deficits. You likely have re-occurring cognitive deficits. You never link together enough stress free days to start to get better. Stress will prevent you from getting better. And, as I have said before, it is not worry stress it is those things that shut your brain down.

But then, I have only lived on this roller coaster for 12 years. I have a big advantage in that I have learned how to let go of those day to day PCS annoyances that cause stress. I don't spend all day wondering when I can live a rocking life. I don't take a break from a stress inducing internet and texting life and jump right back in two days later.

I actually have taken extended breaks from the stressors of life.

I have reinvented some of my life and continue to be flexible to reinvent it more if need be.

There are some who realize that while we are waiting for our life to start, it runs right past us.



But then again, I don't know.....

[Mark in Idaho]

July63,

What do your cognitive psychologists do for you?

Have you found the Aricept to make a difference? Have you tried life without it?

My NeuroPsych Assessment reports have been the same since 2002. But, I have far better function now due to the many work-around skills I have learned.

Some times, I work-around my limits. Other times, I just live with them. It is like a dance with life.

[Lightrail11]

Originally Posted by nwsmith1984

I'm going to see a neuropsych for an evaluation, but what good is that gonna do? That's just going to prove I'm screwed up...but what can they do about it?

I empathize with your ongoing struggle with this.

Regarding the neuropsych evaluation, what they can do about it is help to isolate to a greater degree than you can exactly which your deficits are, and develop therapy strategies to help resolve these. This could involve occupational or speech therapy. My speech therapist had me do specific cognitive exercises that significantly helped resolve my deficits in short term memory and executive functioning.

I understand your frustration; that said, your negative thoughts and emotions may be exacerbating your condition, and the neuropsych evaluation may be helpful here as well.

Best to you as you continue this journey.